Premature Babies and the Lonely Terror of a Pandemic NICU

Lindsey Pervinich found out she was pregnant in the first week of April 2020. She and her husband, Ben, lived in Seattle and the city, one of the first to grapple with Covid-19, had locked down early. They rode out the first few months of her pregnancy the way many people did: washing hands, masking up, ordering grocery delivery. Seattle’s coronavirus case count rose and then fell and then began to rise again. The couple planned a drive-by baby shower for the early fall, with a virtual option for those who couldn’t make the parade. “You don’t imagine that’s how it’s going to be,” she says.

In late August, Lindsey's blood pressure shot up, and she was admitted to the hospital for a few days to get it stabilized. But a week and a half later it was climbing again. She returned to the hospital, and this time she was told to get comfortable—she would have to remain there until her baby was born, perhaps eight weeks or longer. She was 27 weeks into her pregnancy. At that delicate moment, a baby is still building its lungs and guts from scratch, and its skin and internal membranes are too fragile for our rough-edged world. Babies born this early are at risk of brain hemorrhage, heart defects, and more—a terrifying laundry list of dangers. Lindsey hoped to reach at least 34 weeks before delivering.

High blood pressure is a symptom of preeclampsia, which can cause seizures, stroke, and even death in the birth parent. When the meds failed to keep Lindsey’s pressure down, the medical staff in charge of her care tried to prepare her for what was coming. They would have to deliver early, risking the baby’s health to save them both. Late that night, a fellow from the neonatal intensive care unit, or NICU, came to her hospital room to explain what happens when a baby is born after only 27 weeks in utero. Hazy with medication, she took notes on her phone, trying to grasp the immense risks that she and her baby were now facing.

The next morning, September 10, she was taken into surgery for an emergency C-section. On the table, Lindsey fought her panic as the anesthesia erased her lower body, hidden from sight now by drapes. Trying to fasten her mind onto something she could still control, she focused on her baby’s name; it was so early, she and Ben hadn’t even had a chance to choose one. Through her surgical mask, she asked everyone in the operating room their first names. A baby girl was born a few minutes later. At 1 pound and 10 ounces, she was what is sometimes known as a micro-preemie—one of the tiniest, earliest-arriving humans we can hope to keep alive. The Perviniches gave her the name Olivia.

Olivia was born unable to breathe or eat on her own, unable to live without the interventions of medicine and machines. Her survival was uncertain. She would endure chest tubes and needles; she would be intubated after one of her tiny, fragile lungs collapsed. Her care represented a conundrum for the neonatal specialists and hospital staff trying to keep the pandemic at bay. Preterm infants and other sick babies do best when they are surrounded by family—by comforting voices and the steady warmth of a parent’s skin against their own. But the surest way to keep everyone in the hospital safe was to keep them in strict isolation. Here was a stressful paradox: The same measures that protect the NICU from the virus also risk reducing its efficacy.

For many of us, that’s the central dilemma of the pandemic. Social distance is a toxic, two-faced sort of shield, one that harms us even as it keeps us safe. It’s a solitary time for everyone and an especially lonely time to be in a medical crisis. In the NICU, with its patients just starting new lives, the stakes can feel especially high. We all know about the cruelties the pandemic has imposed on the dying. Being born now, too, can be a harrowing, lonely act.

Every hospital department, like all of us in the outside world, has had to make big changes to navigate the pandemic. But the NICU stands out because of the growing understanding that outside visitors—parents—are essential to infants’ care and survival.

For many years, there was a dividing line imposed between NICU babies and their families. In the first half of the 20th century, some early incubators were funded by being put, with their occupants, on public display: You could view preemies along the boardwalks in Atlantic City and Coney Island or at the 1939 New York World’s Fair. Even after neonatal care became formalized in a hospital setting, that tradition, of tiny babies placed behind glass and families peering through from the outside, remained entrenched. Drugs and machines were viewed as the keys to saving preemie lives, and the parents, concerned as they might be, seemed to have no practical role to play.

Then, in the 1970s, doctors in Bogotá, Colombia, pioneered a new method of “kangaroo mother care” out of necessity. Lacking adequate hospital facilities and concerned about the risk of infection, they started sending preemies home and prescribing a strict regimen of breast milk and lots of skin-to-skin contact with a parent. Survival rates surged, and and within a decade hospitals began to incorporate the approach. Now most North American hospitals are involving parents in medical conversations and decisionmaking. In the NICU, the shift also means helping parents with breastfeeding as well as ample time for the baby, even with all their tubes and wires, to rest against a caregiver’s bare chest. In the NICU, human touch can be a powerful medicine.

That’s part of why, most often, NICUs have been exempt from hospitals’ most restrictive Covid-19 policies. Where many adult patients have not been permitted any visitors at all, that step is generally seen as too drastic and harmful to a NICU baby’s development—we all need human touch, but their need for it is urgent enough to warrant a careful easing of the distance we’ve all placed between one another. But how much access is enough, and where do you draw the line?

In New York City last winter, Alice Ruscica and Corey D’Ambra watched a NICU transform before their eyes. Their son, Caelan, was born on February 25, before there were any known Covid-19 cases in the area. At 29 weeks and five days gestation, he arrived a little over 10 weeks early. He weighed 3 pounds and 4 ounces.

In the beginning, Ruscica and D’Ambra brought their parents and friends to the NICU to see their son. D’Ambra worked part-time and took a bus and then a train from their home in New Jersey to Morgan Stanley Children’s Hospital, in northern Manhattan, each day. But every day, it seemed, the bus and the train got emptier. March was like a narrowing tunnel, the light at the far end shrinking too fast. Soon, only Ruscica and D’Ambra were allowed on the ward. And then, one day in mid-March, the couple was told they had to choose which of them would be allowed to visit Caelan from then on.

“We get it,” D’Ambra says. “It’s a pandemic. We want Caelan to be safe, and there are how many other babies in there?” New York City was on its way to becoming a global coronavirus hot spot. But D’Ambra still found it crushing to leave the hospital that day, not knowing when he would see his son again, leaving Ruscica to face the terrors and tedium of the NICU alone.

The hospital had already been working on a pilot project to allow for virtual NICU visits, a HIPAA-compliant two-way video feed for parents to sing, pray, or read to their children, or even engage with the medical team on its daily rounds. Prompted by a New York measles outbreak in 2019, which had forced the NICU to ratchet back on visitation, the program had launched, tentatively, in January, but the pandemic prompted a rapid expansion. D’Ambra was able to beam in daily and to know that Caelan would at least hear his voice. For nearly a month, until his son’s discharge on April 14, the feed was their only form of contact.

Connecting parents and babies was only one complication for hospitals; managing another tenet of preterm care—providing as much breast milk as possible—also became fraught. Many preemies are born without the capacity to latch, suck, and swallow, so many birth mothers wind up pumping their breast milk, whether for feeding through a nasogastric tube that sends the milk directly to the baby’s stomach, or to be saved for later use when they’re able to swallow.

Often, that’s not as simple as it might sound. Preterm birth can complicate lactation, reducing milk supply, and while the ability to provide milk for your child can feel like a gift, it’s a heavy burden when it doesn’t go well. “I gathered that my daughter would be less likely to die if I could manage to … wring some milk out of myself,” the author Sarah DiGregorio writes in “What We Made,” an essay on pumping in the NICU. In the pandemic, hospitals have had to draft pages-long protocols for collecting milk. Both in the hospital and at home, mothers have had to work extra hard to keep their milk and equipment sterile, as have the hospital workers who then deliver their milk.

Spending days and weeks alone with her son in the NICU, Ruscica was almost constantly on edge, and pumping added to the stress. She tried to follow the pandemic sanitation protocol while pumping, but the crises kept coming. Sometimes his face turned blue from lack of oxygen and his monitor’s alarms would sound and she would jump up in terror, afraid that her child was dying, and spill the milk she’d carefully collected. After each of his emergencies had passed and her racing heart had slowed, there was nothing to do but clean herself up and start all over again.

Even in normal times, the rules of the NICU are not so different from those governing life in a pandemic. Here, parents are too often stripped of the small intimacies most others take for granted, and they endure the kinds of little losses we have all been grieving in this last year. Lindsey Pervinich did not get to feel the warmth of her baby against her chest immediately after giving birth, and a moment that might normally be filled with joy and relief was instead shot through with fear.

After the C-section, a medical team whisked Olivia away from the operating table to an adjacent space and hooked her up to a machine to help her breathe. A couple of hours later, they wheeled Lindsey on her hospital bed, hazy with postsurgical drugs, to the NICU to see her daughter for the first time.

For her first 72 hours of life, Olivia couldn’t be jostled or moved, to reduce the risk that the thin walls of her brain would bleed. Lindsey spent most of those hours watching and worrying. She was there when the monitors showed that Olivia’s breathing was getting worse, and when the nurse practitioner ordered an x-ray to learn more. She was there when the x-ray showed a pneumothorax, or collapsed lung, and when the staff cut her baby open and inserted a chest tube to reinflate it.

The tube, taped carefully near Olivia’s ribs, meant another full week before she could be held. Lindsey could only gently rest her hands on her daughter’s body, cupping the little arms and legs close together, in a kind of hand-swaddling meant to mimic the womb. Even stroking her thin skin was off-limits—preemies need touch, but they can take only so much. The anxieties of parenthood are writ large in the NICU: Your care and attention are so necessary but can so easily go awry. Olivia was 10 days old when Lindsey was finally allowed to hold her.

After her own few days in the hospital, Lindsey was discharged and sent home. Every day after that, as she passed through the hospital’s Covid screening gauntlet to visit the NICU, Lindsey had to reckon with the danger that she, her husband, and everyone else who came or went from the hospital represented. They were all bridges to the outside world, the potential gaps in the NICU’s armor, and that knowledge always hummed below the surface.

In the first weeks, Lindsey and Ben took turns spending the night in the NICU on a pullout couch in Olivia’s room, snatching sleep in between the alarms from her monitors. A preemie’s progress isn’t necessarily linear. There can be crash after crash, such as when the baby stops breathing or picks up an infection. The vigil is dull and frightening and lonely all at once. It can feel impossible to look away, even for a moment, lest another crisis emerge—and Covid regulations didn’t really allow Lindsey to step away, had she wanted to. After arriving each day, Lindsey was not permitted to come and go, whether to grab lunch outside or to clear her head in the autumn air. “Sitting in the same position, in the same room, all day every day, is in its own way a little bit physically taxing,” she says. She was allowed one detour from the NICU daily, as long as she remained within the hospital, so she might leave her daughter’s room for a cafeteria coffee or one of her postpartum checkups, but that was about it. Otherwise, she watched and willed her baby to grow.

By the fifth or sixth week, the couple started spending one or two nights a week at home together. By the time Olivia was two months old, she was stable enough that they felt safe sleeping in their own bed more regularly. They were finally able to look away, to exhale. In early December, with Lindsey’s original due date looming, they were hopeful Olivia would be able to come home with them for Christmas. She was breathing on her own by now but was still having some trouble feeding. The NICU required that she make it five days without what they call an “event”—a respiratory or cardiovascular incident requiring medical intervention from the staff. Five days hardly seems like enough time between scares for a parent’s peace of mind, but Lindsey was eager to get her baby home, where the pandemic seemed easier to keep at bay. On December 15, after 96 days in the NICU, Olivia was discharged.

Both Lindsey and her husband are seeing therapists to help them work through the strain and trauma of their months in the NICU. In a normal time, they might have found some relief and camaraderie from hospital support groups or informal encounters with other parents in communal NICU spaces. But the pandemic stole those options, along with any comfort that having friends and family close might bring. During week after week of daily vigils in their daughter’s hospital room, nobody could come over to their house to cook them a meal, laugh or cry over a glass of wine, or throw in a load of laundry.

When Olivia came home, she still needed her feeding tube for the first three weeks or so. She slept with a monitor that kept watch on her heart rate and oxygen levels. She is particularly vulnerable to respiratory infections, and Lindsey remains very cautious. In early January, as Seattle’s health care workers rolled up their sleeves for the first rounds of vaccinations, she took Olivia for a walk in a stroller, out in the streets full of strangers’ aerosols and droplets, for the very first time. After a seemingly endless series of rainy days, the clouds receded over Seattle and the family was able to enjoy three simple things they had largely been denied in the four months since the birth—the things that many of us took for granted before this past year: fresh air, sunshine, and movement.

Lindsey is still struck by the strangeness, the near-secrecy, of having a NICU baby in a pandemic. Most of her friends and family, and all of her colleagues, never even saw her while she was pregnant. Not one of them has squeezed a toe or breathed in the scent of her months-old baby. It’s all a bit surreal. For some of the people in her pre-pandemic life, it will be as though the pregnancy, the terrifyingly early birth, and the long, anxious months in the NICU never happened. Lindsey’s baby will seem to have appeared out of thin air.

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